Dr. Leif Hanlen - NICTA

Open Clinical Data or

How I learned to stop worrying and love the open approach

Leif Hanlen Technology Director, NICTA

Conclusion: data sharing is here. •  Why must we?

–  “keep it secret, keep it safe” no longer acceptable. –  Assume sharing, and build the infrastructure to suit

•  Why don’t we? –  Status quo is easy, and the incenEves are wrong –  Tender-‐based procurement process is a huge barrier

•  How could we? –  Start small, build trust, deploy fast, repeat. –  Data is just the “gateway”

to open innovaEon

Who is NICTA?

•  Australia’s ICT research center of excellence –  “High impact research excellence”

• NaEonal benefit and wealth creaEon –  700 people (300+ research staff) –  5 laboratories, 22 partner Australian universiEes

• Over one-‐quarter of all the PhD graduates in ICT, in Australia, are supervised at NICTA.

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We’ve launched a 15 startups in the last 10 years.

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Transforming innova-ve technologies to advance the understanding of human diseases and to improve the health and well being of Australians

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Implant systems: $5m spin-out, 10 patients

Big data health Web RTC

Too much data

Crane and Raymond The Permanente Journal Winter 2003 Volume 7 No.1 Kaiser Permanente Institute for Health Policy

“Current medical practice relies heavily on the unaided mind to recall a great amount of detailed knowledge – a process which, to the detriment of all stakeholders, has repeatedly been shown unreliable”

Your procurement process is harmful

It's a very sobering feeling to be up in space and realize that one's safety factor was determined by the lowest bidder on a government contract. Alan Shepard Jr.

2nd person in space 5th person to walk on the moon

Interoperability? Standards? Think parenEng.

“All standards were open, and enforced. The information management component of the system used SnoMed-CT and ICD-10 for terminology. All interfaces were open, and documented. Vendors were informed they could use any back-end system to support the requirements, but the interface compliance and standards compliance were strictly enforced.”

RPDE, interview notes 2010

Procurement: The old way

Domain expertise and reasoning

hidden

RFT

I must have..

The old way


hidden

they want what?!

How many features?

What about..?

Response

Solution expertise and reasoning

hidden

RFT

I must have

The old way


hidden

they want what?!

How many features?

What about..?

Response

Solution expertise and reasoning

hidden

RFT

Winner takes all

Reasoning & variation

hidden

I must have

evaluate

Semi-‐agile, semi-‐formal: modified Delphi

Warren, Pollock, A Framework for Health IT Evaluation, HINZ 2011

End-user vision

Vendor co-design

Proceed?

All vendors under contract. IP owned by End-user (Health)

Final requirements Budget, Resources, IT

Preferred vendor

consortium

Agile delivery

Prototype(s)

www.FairWarning.com

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57.9 percent stated that if they were going to a hospital for treatment and discovered there had been breaches of personal information about patients, they would choose to be treated at another hospital.

Figure 3. Patient perception of reputational damage as a result of privacy breaches

Survey data reveals that Australian patients have a strong belief that additional privacy laws and greater enforcement of privacy laws would provide a greater impetus for healthcare providers to take privacy more seriously.

A majority, 59.1 percent of Australian patients stated that new and stronger laws are needed to guarantee the privacy of patient information. 75.3 percent of patients agreed that stronger enforcement of existing data protection laws would result in fewer privacy breaches. The majority of Australian patients, 53.5 percent stated that they do not believe the laws to protect patient privacy are properly enforced. Australian patients noted that healthcare providers and hospitals should be held responsible for following the law. 87.3 percent agreed that healthcare providers and hospitals must uphold the data protection laws currently in place.

0.0%

10.0%

20.0%

30.0%

40.0%

50.0%

60.0%

Severe damage Considerabledamage

Minor damage None

% of Australian Patients Noting Reputational Damage as a Result of Privacy Breaches

3 out of 4 Australian patients surveyed believe stronger enforcement of existing

privacy protection laws would reduce the number of privacy

breaches.

www.FairWarning.com

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Executive Overview - Summary of Key Findings Trust in the confidentiality of medical records is influencing when, where, from whom and what kind of medical treatment is delivered to patients in Australia. These privacy concerns affect the flow of information to providers to use in the diagnosis and care of their patients.

49.1 percent of Australian patients stated they have withheld or would withhold information from their care provider if the care provider had a poor record of protecting patient privacy. 38.2 percent stated they have or would postpone seeking care for a sensitive medical condition due to privacy concerns. More than 2 out of 5 Australian patients, 43.5 percent indicated they would seek care outside of their community due to privacy concerns, with 28.0 percent indicating they would travel substantial distances, 50 kilometers or more, to avoid being treated at a hospital they did not trust, in order to keep sensitive information confidential. By withholding medical information, Australian patients are impacting the care received and hence the outcome.

Patient treatment in modern healthcare is entirely information-based. Any friction in the free flow of information between care providers and patients, such as that caused by privacy concerns, prevents the patient from receiving the best possible care. Australian responses indicate that there is more work to be done to enable the free flow of pertinent medical information, and thus the best patient care outcomes.

Figure 1. Patients’ Willingness to Travel to Avoid Privacy Concerns

0% 5% 10% 15% 20% 25% 30%

More than 50 km

50 km

40 km

30 km

20 km

Up to 10 km

% of Patients Willing to Travel to Seek Care Outside of their Community Due to Privacy Concerns

Nearly half of Australian patients surveyed stated that, if they had a sensitive medical

condition, they would withhold information from

their care provider. More than 2 out of 5 stated they would postpone seeking care out of

privacy concerns.

Privacy?

Privacy isn’t an “electronic” issue

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THOUSANDS of children's medical files from a controversial treatment program for hyperactivity and dyslexia have been left strewn throughout an abandoned clinic in Melbourne's inner east for the past three years. Sun Herald 2011

Data: Hotel California

•  Ethics approval –  Single purpose –  Delete on complete

•  Research-‐only

•  Custodian-‐ship –  “ownership”

Where’s my E-‐Referral?

GET IN TOUCH Eleonor Pritchard, eHealth Team Leader, Medicare Local

t 02 6287 8099 f 02 6287 8055 [email protected]

Requirement 3: Data Records and Clinical Coding There are no software conformance requirements for this Requirement.

This requirement is a work process change associated with whichever medical vocabulary used by the vendor (such as SNOMED-CT, DOCLE, PYEFINCH and ICPC2+).

x Medical Director: DOCLE x Best Practice: PYEFINCH x Zedmed: ICPC2+ x MedTech 32: ICPC2+ x Genie: ICPC2+ (subscription fee applies)

The practice must:

1. Ensure that where clinically relevant, they are working towards recording the majority of diagnoses for active patients electronically using a medical vocabulary that will eventually be mapped against a nationally recognised disease classification or terminology system.

2. Provide a written policy to this effect to all GPs within the practice.

Requirement 4: Electronic Transfer of Prescriptions The practice must:

1. Use a software system that is able to send an electronic prescription to a Prescription Exchange Service (PES) operator for later retrieval by a dispenser at the time of dispensing.

Requirement 5: Personally Controlled Electronic Health (eHealth) Record System The practice must:

1. Use compliant software for accessing the personally controlled electronic health (eHealth) record system, and creating and posting Shared Health Summaries and when available, Event Summaries; and

2. Apply to participate in the eHealth record system upon obtaining a HPI-O.

This was all electronic.

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Meet the new ^ Chief Technology Officer. Health

This is her office:

© Gizbot

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Co-‐design; co-‐develop; co-‐deploy

How it works •  Projects proposed with joint development

–  Niche enterprise, students, researchers, developers –  Delivery focus

•  Trials and evaluaEon in clinical space –  Scale & sustainability built into project –  External funding

•  State health department visibility –  Health CIO part of the Lab’s governance –  Interact with key stakeholders

Some projects

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Free SnoMed CT encoding

Hospital infection control

Nursing handover

WebRTC: document & video sharing in browser

Officer End Web based video communicaEon with document sharing that integrates with your work flow •  Three-‐way Conferencing: introduce a supervisor, translator or sign

language interpreter into a session. •  Secure communicaEon: 100% end-‐to-‐end encrypEon. No specialised

so,ware or hardware. •  100% Cloud SoluEon: uElising standard off-‐the-‐shelf equipment.

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Mobile: Social; chronic disease management

30 people, 18 months

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5

10

15

30-3

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40-4

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50-5

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60-6

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70+

Cohort

“Why can’t I get my scripts on this thing too?” 60+ year-old patient query to Pharmacist.

Positioning mobile tablet devices within the context of primary care: Proposing an integrated mHealth model for type 2 diabetes patients, S. Park etal.

Mobile health •  SMS booking & modificaEon

–  Updates, coordinate visits, educaEon –  Add on services & follow up

•  Lots of contact points beyond E.H.R’s –  Business data –  Interoperability happens by customer demand!

(not by direcEve)

•  Extend to WebRTC & home-‐monitoring

Hand-‐held EHR •  Sufficient compute power

–  Whole genome analyEcs in iPhone

•  Data stored on device. Share encrypted data –  Test results also encrypted. Share encrypted outcomes –  YOU decide when & what to share and with whom.

•  We call it MAGIC.

Magic

Gain insight from data, without seeing the data!

Analysis without sharing data OR test parameters

NaEonal Map free, open source, open data, open access Project Background

Based on the tenants of open data, the project is centred on providing an improved data infrastructure and visualisation capability for Australians to government data.

The aim of the project is to bring together dispersed information, which has been collected and produced by governments at all levels and in all functions, into an easily searchable, viewable and fully customisable map-based view.

The sort of searchable data that will be available is varied and includes data about broadband coverage, location of surface water and waste management facilities, proposed infrastructure developments such as gas lines, and electoral boundaries.

What is the technology?The National Map has been designed to be a fully open framework. The web front-end connects directly to data servers at each government agency using open protocols and open data formats.

Any data viewed in the National Map can easily be directly accessed for use outside the National Map.

As well as getting data directly from government agencies, the National Map talks to data.gov.au so that any spatial data available in data.gov.au is available in the National Map. The National Map is also now used as a previewer for spatial data sets in the data.gov.au site.

The National Map website could eventually assist with the visualisation management of environmental information, such as ecosystems, koala movements, salinity and air quality.

NICTA’s unique approachRelying on the strong geospatial visualisation skills at NICTA, the software uses Cesium, an open source WebGL virtual globe and map engine, which NICTA is co-developing with an international community of developers.

NICTA is also investigating building specialised National Map based products

that cater to different verticals into the future.

CollaboratorsThe National Map is an initiative that NICTA has built for the Department of Communications. It has also partnered with Geoscience Australia on the project and worked with many other government agencies in providing access to their services.

StatusThe current version of the National Map is available as a ‘beta’ service at http://nationalmap.nicta.com.au and is used as a spatial data previewer at http://data.gov.au. It will become a fully supported production site (at a .gov.au address) towards the end of 2014.

National Map

Putting government spatial data, which was previously difficult to access, into the hands of community, software developers and industry will act as a key enabler of innovation and boost to government and industry productivity.

Working for the Department of Communications (and working closely with partner Geoscience Australia), NICTA developed the software for the National Map initiative which makes it possible for everyone to benefit from the masses of data stored in government databases. It is anticipated the availability of this data will prompt new businesses that can provide better services to the community. The National Map website will also act as an incentive to government to release more data, in a searchable and reusable format, into the community.

Business Contact Peter LeihnDirector, Security and Environment Business [email protected]

Technical Contact Bill Simpson-YoungDirector, Engineering and Technology [email protected]

The National Map Project is part the Security and Environment Business Team providing security for people, resources and critical systems.

nationalmap.research.nicta.com.au

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Dr. Leif Hanlen - NICTA

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